Meet Roy
At just 2 years of age, Roy has already shown incredible strength and resilience. In addition to undergoing testing for a rare condition doctors believe may be Kabuki Syndrome, Roy also survived a stroke in utero that caused a brain injury, most likely resulting in Cerebral Palsy. His parents, Ines and Doug, are doing everything they can to help him reach his milestones and gain independence.
Simple skills that come naturally to other children take tremendous effort for Roy. Right now, Roy is working hard to learn how to eat food—he's currently fed almost entirely by g-tube. He's also working hard just to roll all the way over—a stepping stone that will eventually help him learn to crawl, sit, and walk. Every gain he makes requires countless hours of therapy, dedication, and support.
The cost of helping a child with a disability and complex diagnosis can be overwhelming, but Iness and Doug know that doing whatever it takes is worth it. They are pursuing life-changing treatments and therapies for Roy, including:
- Duke Stem Cell Intervention: $15,000, plus about $2,000 in travel
- All Kids Are Perfect Intensives (North Carolina): two sessions, two weeks each, with travel – around $16,000 total
- Hyperbaric Oxygen Therapy and Neurop: Hundreds of dollars per dive. A home chamber is about $14,000, and treatment with world leader Dr. Harch in New Orleans would be another $14,000
- Masgutova Neurosensorimotor Reflex Integration (MNRI) Intensive Therapy (Orlando): 5 days, with travel around $7,000 total
- Pediatric Feeding Institute Intensive (Boca Raton): one week, about $6,000
- Infinity Neuromotor Development Center Intensive (Iowa): two weeks, with travel, around $12,000
These are just the beginning of the expenses that Roy’s family is facing on their journey to give him the best chance at independence.
Ines and Doug will be posting updates here to share Roy’s progress, and they invite you to follow along and support his journey. Together, we can cheer him on as he fights to reach every milestone.
Join us in supporting #TeamRoy — every gift makes a difference in helping Roy build the stepping stones to a brighter, more independent future.
Those who would like to help the family can:
- Choose from Support Registry options
- ‘Share’ to Spread the Word to family and friends
- ‘Follow’ Updates to stay informed
Thank you.
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